{"title":"Designing AI for mental health diagnosis: responding to critics.","authors":"Edmund Terem Ugar, Ntsumi Malele","doi":"10.1136/jme-2024-110244","DOIUrl":"10.1136/jme-2024-110244","url":null,"abstract":"","PeriodicalId":16317,"journal":{"name":"Journal of Medical Ethics","volume":" ","pages":"604-605"},"PeriodicalIF":3.3,"publicationDate":"2024-08-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141558958","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
In her recent paper, Emanuele Mangione proposes combining maternal spindle transfer (MST) and reciprocal effortless in vitro fertilisation (ReIVF) to enable both females to have genetic and gestational ties with the same child, which can particularly benefit lesbian couples. This response rejects Mangione's proposal for the reason that the additional biological ties created by MST+ReIVF, compared with the reception of oocytes from partner (ROPA), are unnecessary. ROPA is currently the most effective method for redistributing biological ties within lesbian couples, allowing one member to provide the egg and the other to carry the fetus. The additional biological ties created by MST+ReIVF are quantitatively too small to significantly enhance parental bonding or couple relationships, and their potential harms to both prospective parents and children outweigh any minor benefits. Furthermore, like ROPA, MST+ReIVF fails to address deeper feminist concerns. Therefore, I propose a new idea: combining in vitro gametogenesis with ectogenesis, which can offer far more reproductive choices and greater potential to address deeper feminist concerns than MST+ReIVF.
{"title":"The unnecessary 'more'-compared to ROPA: a reply to Mangione.","authors":"Jolie Zhou","doi":"10.1136/jme-2024-110285","DOIUrl":"https://doi.org/10.1136/jme-2024-110285","url":null,"abstract":"<p><p>In her recent paper, Emanuele Mangione proposes combining maternal spindle transfer (MST) and reciprocal effortless in vitro fertilisation (ReIVF) to enable both females to have genetic and gestational ties with the same child, which can particularly benefit lesbian couples. This response rejects Mangione's proposal for the reason that the additional biological ties created by MST+ReIVF, compared with the reception of oocytes from partner (ROPA), are unnecessary. ROPA is currently the most effective method for redistributing biological ties within lesbian couples, allowing one member to provide the egg and the other to carry the fetus. The additional biological ties created by MST+ReIVF are quantitatively too small to significantly enhance parental bonding or couple relationships, and their potential harms to both prospective parents and children outweigh any minor benefits. Furthermore, like ROPA, MST+ReIVF fails to address deeper feminist concerns. Therefore, I propose a new idea: combining in vitro gametogenesis with ectogenesis, which can offer far more reproductive choices and greater potential to address deeper feminist concerns than MST+ReIVF.</p>","PeriodicalId":16317,"journal":{"name":"Journal of Medical Ethics","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2024-08-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141971258","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
People with disabilities are subject to multiple forms of health-related and wider social disparities; carefully focused research is required to inform more inclusive, safe and effective healthcare practice and policy. Through lived experience, disabled people are well positioned to identify and persistently pursue problems and opportunities within existing health provisions that may be overlooked by a largely non-disabled research community. Thus, the academy can play an important role in shining a light on the perspectives and insights from within the disability community, and combined with policy decisions, these perspectives and insights have a better opportunity to become integrated into the fabric of public life, within healthcare and beyond. However, despite the potential benefits that could be yielded by greater inclusivity, in this paper we describe barriers within the UK academy confronting disabled people who wish to embark on health research. We do this by drawing on published findings, and via the lived experience of the first author, who has struggled for over 3 years to find an accessible PhD programme as a person with energy limiting conditions who is largely confined to the home in the UK. First, we situate the discussion in the wider perspective of epistemic injustice in health research. Second, we consider evidence of epistemic injustice among disabled researchers, focusing primarily on what philosophers Kidd and Carel (2017, p 184) describe as 'strategies of exclusion'. Third, we offer recommendations for overcoming these barriers to improve the pipeline of researchers with disabilities in the academy.
残疾人在健康方面存在多种形式的差异,在更广泛的社会范围内也存在差异;需要开展重点明确的研究,为更具包容性、安全和有效的医疗保健实践和政策提供信息。通过生活经验,残疾人能够很好地发现并坚持不懈地寻求现有医疗服务中存在的问题和机遇,而这些问题和机遇可能会被大部分非残疾人研究团体所忽视。因此,学术界可以发挥重要作用,揭示来自残疾人群体的观点和见解,并与政策决策相结合,使这些观点和见解有更好的机会融入医疗保健内外的公共生活结构中。然而,尽管更大的包容性可以带来潜在的益处,但在本文中,我们将描述英国学术界中希望从事健康研究的残障人士所面临的障碍。第一位作者是一位精力受限者,在英国大部分时间只能待在家里,三年多来,她一直在努力寻找一个无障碍的博士项目。首先,我们将讨论置于健康研究中的认识论不公正这一更广阔的视角中。其次,我们考虑了残疾研究人员认识论不公正的证据,主要关注哲学家基德和卡瑞尔(Kidd and Carel, 2017, p 184)所描述的 "排斥策略"。第三,我们提出了克服这些障碍的建议,以改善残疾研究人员在学术界的发展渠道。
{"title":"Epistemic injustice, healthcare disparities and the missing pipeline: reflections on the exclusion of disabled scholars from health research.","authors":"Joanne Hunt, Charlotte Blease","doi":"10.1136/jme-2023-109837","DOIUrl":"10.1136/jme-2023-109837","url":null,"abstract":"<p><p>People with disabilities are subject to multiple forms of health-related and wider social disparities; carefully focused research is required to inform more inclusive, safe and effective healthcare practice and policy. Through lived experience, disabled people are well positioned to identify and persistently pursue problems and opportunities within existing health provisions that may be overlooked by a largely non-disabled research community. Thus, the academy can play an important role in shining a light on the perspectives and insights from within the disability community, and combined with policy decisions, these perspectives and insights have a better opportunity to become integrated into the fabric of public life, within healthcare and beyond. However, despite the potential benefits that could be yielded by greater inclusivity, in this paper we describe barriers within the UK academy confronting disabled people who wish to embark on health research. We do this by drawing on published findings, and via the lived experience of the first author, who has struggled for over 3 years to find an accessible PhD programme as a person with energy limiting conditions who is largely confined to the home in the UK. First, we situate the discussion in the wider perspective of epistemic injustice in health research. Second, we consider evidence of epistemic injustice among disabled researchers, focusing primarily on what philosophers Kidd and Carel (2017, p 184) describe as 'strategies of exclusion'. Third, we offer recommendations for overcoming these barriers to improve the pipeline of researchers with disabilities in the academy.</p>","PeriodicalId":16317,"journal":{"name":"Journal of Medical Ethics","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2024-08-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141086569","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
In research involving patients with implantable brain-computer interfaces (BCIs), there is a regulatory gap concerning post-trial responsibilities and duties of sponsors and investigators towards implanted patients. In this article, we analyse the case of patient R, who underwent non-voluntary explantation of an implanted BCI, causing a discontinuation in her sense of agency and self. To clarify the post-trial duties and responsibilities involved in this case, we first define the ontological status of the BCI using both externalist (EXT) and internalist (INT) theories of cognition. We then give particular focus to the theories of extended and embedded cognition, hence considering the BCI either as a constitutive component of the patient's mind or as a causal supporter of her brain-based cognitive capacities. We argue that patient R can legitimately be considered both as an embedded and extended cognitive agent. Then, we analyse whether the non-voluntary explantation violated patient R's (neuro)rights to cognitive liberty, mental integrity, psychological continuity and mental privacy. We analyse whether and how different mental ontologies may imply morally relevant differences in interpreting these prima facie neurorights violations and the correlational duties of sponsors and investigators. We conclude that both mental ontologies support the identification of emerging neurorights of the patient and give rise to post-trial obligations of sponsors and investigators to provide for continuous technical maintenance of implanted BCIs that play a significant role in patients' agency and sense of self. However, we suggest that externalist mental ontologies better capture patient R's self-conception and support the identification of a more granular form of mental harm and associated neurorights violation, thus eliciting stricter post-trial obligations.
在涉及植入式脑机接口(BCI)患者的研究中,赞助商和研究人员在试验后对植入患者的责任和义务方面存在监管空白。在本文中,我们分析了患者 R 的案例,她在非自愿的情况下拆除了植入的 BCI,导致其代理感和自我意识中断。为了澄清该案例中涉及的审判后义务和责任,我们首先使用外部主义(EXT)和内部主义(INT)认知理论定义了 BCI 的本体论地位。然后,我们特别关注扩展认知理论和嵌入认知理论,从而将 BCI 视为患者心智的构成部分或其大脑认知能力的因果支持者。我们认为,患者 R 既可以被视为嵌入式认知主体,也可以被视为扩展认知主体。然后,我们分析了非自愿切除是否侵犯了患者 R 的(神经)认知自由权、精神完整性、心理连续性和精神隐私权。我们分析了不同的精神本体论在解释这些表面上侵犯神经权利的行为以及赞助者和研究者的相关责任时,是否以及如何意味着道德上的相关差异。我们的结论是,这两种精神本体论都支持对患者新出现的神经权利的识别,并使赞助商和研究人员承担试验后义务,为植入式生物识别装置提供持续的技术维护,因为这些装置在患者的代理和自我意识中发挥着重要作用。然而,我们认为外部主义精神本体论能更好地捕捉患者 R 的自我感知,并支持识别更细化的精神伤害形式和相关的神经权利侵犯,从而引起更严格的试验后义务。
{"title":"Non-voluntary BCI explantation: assessing possible neurorights violations in light of contrasting mental ontologies.","authors":"Guido Cassinadri, Marcello Ienca","doi":"10.1136/jme-2023-109830","DOIUrl":"https://doi.org/10.1136/jme-2023-109830","url":null,"abstract":"<p><p>In research involving patients with implantable brain-computer interfaces (BCIs), there is a regulatory gap concerning post-trial responsibilities and duties of sponsors and investigators towards implanted patients. In this article, we analyse the case of patient R, who underwent non-voluntary explantation of an implanted BCI, causing a discontinuation in her sense of agency and self. To clarify the post-trial duties and responsibilities involved in this case, we first define the ontological status of the BCI using both externalist (EXT) and internalist (INT) theories of cognition. We then give particular focus to the theories of extended and embedded cognition, hence considering the BCI either as a constitutive component of the patient's mind or as a causal supporter of her brain-based cognitive capacities. We argue that patient R can legitimately be considered both as an embedded and extended cognitive agent. Then, we analyse whether the non-voluntary explantation violated patient R's (neuro)rights to cognitive liberty, mental integrity, psychological continuity and mental privacy. We analyse whether and how different mental ontologies may imply morally relevant differences in interpreting these prima facie neurorights violations and the correlational duties of sponsors and investigators. We conclude that both mental ontologies support the identification of emerging neurorights of the patient and give rise to post-trial obligations of sponsors and investigators to provide for continuous technical maintenance of implanted BCIs that play a significant role in patients' agency and sense of self. However, we suggest that externalist mental ontologies better capture patient R's self-conception and support the identification of a more granular form of mental harm and associated neurorights violation, thus eliciting stricter post-trial obligations.</p>","PeriodicalId":16317,"journal":{"name":"Journal of Medical Ethics","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2024-08-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141906788","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Infertility patients and patient advocates have long argued for classifying infertility as a disease, in the hopes that this recognition would improve coverage for and access to fertility treatment. However, for many fertility patients, including older women, single women and same-sex couples, infertility does not represent a true disease state. Therefore, while calling infertility a 'disease' may seem politically advantageous, it might actually exclude patients with 'social' or 'relational' infertility from treatment. What is needed is a new conceptual framing of infertility that better reflects the profound significance of being infertile for many people and the importance of addressing infertility in order to improve their lives. In this paper, we argue that the capability approach provides this moral underpinning. The capability approach is concerned with what people are able to do, and whether they are able to act in a way that is in keeping with their own values and goals. The ability to procreate and build a family is a fundamental capacity and can be a major part of self-fulfilment, regardless of sexual orientation or family arrangement. Since the capability approach asks us to conceive of equality in terms of equal capabilities, it provides a strong ethical impetus for society to help those who cannot conceive on their own to do so with assisted reproduction.
{"title":"Treating infertility as a missing capability, not a disease: a capability approach.","authors":"Michelle Jessica Bayefsky, Arthur Caplan","doi":"10.1136/jme-2024-109877","DOIUrl":"https://doi.org/10.1136/jme-2024-109877","url":null,"abstract":"<p><p>Infertility patients and patient advocates have long argued for classifying infertility as a disease, in the hopes that this recognition would improve coverage for and access to fertility treatment. However, for many fertility patients, including older women, single women and same-sex couples, infertility does not represent a true disease state. Therefore, while calling infertility a 'disease' may seem politically advantageous, it might actually exclude patients with 'social' or 'relational' infertility from treatment. What is needed is a new conceptual framing of infertility that better reflects the profound significance of being infertile for many people and the importance of addressing infertility in order to improve their lives. In this paper, we argue that the capability approach provides this moral underpinning. The capability approach is concerned with what people are able to <i>do</i>, and whether they are able to act in a way that is in keeping with their own values and goals. The ability to procreate and build a family is a fundamental capacity and can be a major part of self-fulfilment, regardless of sexual orientation or family arrangement. Since the capability approach asks us to conceive of equality in terms of equal capabilities, it provides a strong ethical impetus for society to help those who cannot conceive on their own to do so with assisted reproduction.</p>","PeriodicalId":16317,"journal":{"name":"Journal of Medical Ethics","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2024-08-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141906789","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
It is commonly accepted that clinicians are ethically obligated to disclose their use of medical machine learning systems to patients, and that failure to do so would amount to a moral fault for which clinicians ought to be held accountable. Call this 'the disclosure thesis.' Four main arguments have been, or could be, given to support the disclosure thesis in the ethics literature: the risk-based argument, the rights-based argument, the materiality argument and the autonomy argument. In this article, I argue that each of these four arguments are unconvincing, and therefore, that the disclosure thesis ought to be rejected. I suggest that mandating disclosure may also even risk harming patients by providing stakeholders with a way to avoid accountability for harm that results from improper applications or uses of these systems.
{"title":"Are clinicians ethically obligated to disclose their use of medical machine learning systems to patients?","authors":"Joshua Hatherley","doi":"10.1136/jme-2024-109905","DOIUrl":"https://doi.org/10.1136/jme-2024-109905","url":null,"abstract":"<p><p>It is commonly accepted that clinicians are ethically obligated to disclose their use of medical machine learning systems to patients, and that failure to do so would amount to a moral fault for which clinicians ought to be held accountable. Call this 'the disclosure thesis.' Four main arguments have been, or could be, given to support the disclosure thesis in the ethics literature: the risk-based argument, the rights-based argument, the materiality argument and the autonomy argument. In this article, I argue that each of these four arguments are unconvincing, and therefore, that the disclosure thesis ought to be rejected. I suggest that mandating disclosure may also even risk harming patients by providing stakeholders with a way to avoid accountability for harm that results from improper applications or uses of these systems.</p>","PeriodicalId":16317,"journal":{"name":"Journal of Medical Ethics","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2024-08-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141906787","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Waleszczyński critiques my argument for why the relationship between a pregnant person and any fetus they carry is not a relationship between a parent and a child. I argue Waleszczyński does not show that my 'argument from potentiality' is inadequate, and I provide further justification for why birth marks a transformative shift into a moral relationship.
{"title":"Birth's transformative shift: a response to Waleszczyński.","authors":"Prabhpal Singh","doi":"10.1136/jme-2024-110307","DOIUrl":"https://doi.org/10.1136/jme-2024-110307","url":null,"abstract":"<p><p>Waleszczyński critiques my argument for why the relationship between a pregnant person and any fetus they carry is not a relationship between a parent and a child. I argue Waleszczyński does not show that my 'argument from potentiality' is inadequate, and I provide further justification for why birth marks a transformative shift into a moral relationship.</p>","PeriodicalId":16317,"journal":{"name":"Journal of Medical Ethics","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2024-08-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141893532","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Rikard Rosenbacke, Åsa Melhus, Martin McKee, David Stuckler
Can AI substitute a human physician's second opinion? Recently the Journal of Medical Ethics published two contrasting views: Kempt and Nagel advocate for using artificial intelligence (AI) for a second opinion except when its conclusions significantly diverge from the initial physician's while Jongsma and Sand argue for a second human opinion irrespective of AI's concurrence or dissent. The crux of this debate hinges on the prevalence and impact of 'false confirmation'-a scenario where AI erroneously validates an incorrect human decision. These errors seem exceedingly difficult to detect, reminiscent of heuristics akin to confirmation bias. However, this debate has yet to engage with the emergence of explainable AI (XAI), which elaborates on why the AI tool reaches its diagnosis. To progress this debate, we outline a framework for conceptualising decision-making errors in physician-AI collaborations. We then review emerging evidence on the magnitude of false confirmation errors. Our simulations show that they are likely to be pervasive in clinical practice, decreasing diagnostic accuracy to between 5% and 30%. We conclude with a pragmatic approach to employing AI as a second opinion, emphasising the need for physicians to make clinical decisions before consulting AI; employing nudges to increase awareness of false confirmations and critically engaging with XAI explanations. This approach underscores the necessity for a cautious, evidence-based methodology when integrating AI into clinical decision-making.
{"title":"AI and XAI second opinion: the danger of false confirmation in human-AI collaboration.","authors":"Rikard Rosenbacke, Åsa Melhus, Martin McKee, David Stuckler","doi":"10.1136/jme-2024-110074","DOIUrl":"https://doi.org/10.1136/jme-2024-110074","url":null,"abstract":"<p><p>Can AI substitute a human physician's second opinion? Recently the <i>Journal of Medical Ethics</i> published two contrasting views: Kempt and Nagel advocate for using artificial intelligence (AI) for a second opinion except when its conclusions significantly diverge from the initial physician's while Jongsma and Sand argue for a second human opinion irrespective of AI's concurrence or dissent. The crux of this debate hinges on the prevalence and impact of 'false confirmation'-a scenario where AI erroneously validates an incorrect human decision. These errors seem exceedingly difficult to detect, reminiscent of heuristics akin to confirmation bias. However, this debate has yet to engage with the emergence of explainable AI (XAI), which elaborates on why the AI tool reaches its diagnosis. To progress this debate, we outline a framework for conceptualising decision-making errors in physician-AI collaborations. We then review emerging evidence on the magnitude of false confirmation errors. Our simulations show that they are likely to be pervasive in clinical practice, decreasing diagnostic accuracy to between 5% and 30%. We conclude with a pragmatic approach to employing AI as a second opinion, emphasising the need for physicians to make clinical decisions before consulting AI; employing nudges to increase awareness of false confirmations and critically engaging with XAI explanations. This approach underscores the necessity for a cautious, evidence-based methodology when integrating AI into clinical decision-making.</p>","PeriodicalId":16317,"journal":{"name":"Journal of Medical Ethics","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2024-07-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141792612","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
The Journal of Medical Ethics previously published on the debate in the UK and the Netherlands concerning the legal age limits imposed on donor-conceived people for access to information about the identity of gamete and embryo donors. In that publication, three arguments were foregrounded against lowering these age limits as a general rule for all donor-conceived people. In this contribution, we engage with these arguments and argue why we think they are insufficient to maintain the age limits. In contrast, we argue for a more suited, contextual and relational ethical framework based on care ethics, which emphasises relational autonomy and its dynamic, contextual development. This framework, we argue, provides a comprehensive approach for the analysis we made of the question of age limits and was applied in research performed in the Netherlands, commissioned by the Dutch Minister of Health. The framework enabled us to weigh the multidisciplinary-legal, psychological, phenomenological and ethical-findings of our research.
{"title":"Response: arguments to abolish the legal age limits of access to information about the gamete donor by donor offspring.","authors":"Inge van Nistelrooij, Nicolette Woestenburg","doi":"10.1136/jme-2024-110230","DOIUrl":"10.1136/jme-2024-110230","url":null,"abstract":"<p><p>The <i>Journal of Medical Ethics</i> previously published on the debate in the UK and the Netherlands concerning the legal age limits imposed on donor-conceived people for access to information about the identity of gamete and embryo donors. In that publication, three arguments were foregrounded against lowering these age limits as a general rule for all donor-conceived people. In this contribution, we engage with these arguments and argue why we think they are insufficient to maintain the age limits. In contrast, we argue for a more suited, contextual and relational ethical framework based on care ethics, which emphasises relational autonomy and its dynamic, contextual development. This framework, we argue, provides a comprehensive approach for the analysis we made of the question of age limits and was applied in research performed in the Netherlands, commissioned by the Dutch Minister of Health. The framework enabled us to weigh the multidisciplinary-legal, psychological, phenomenological and ethical-findings of our research.</p>","PeriodicalId":16317,"journal":{"name":"Journal of Medical Ethics","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2024-07-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141766309","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
In recent years, the principle of informed consent has come under significant pressure with the rise of biobanks and data infrastructures for medical research. Study-specific consent is unfeasible in the context of biobank and data infrastructure research; and while broad consent facilitates research, it has been criticised as being insufficient to secure a truly informed consent. Dynamic consent has been promoted as a promising alternative approach that could help patients and research participants regain control over the use of their biospecimen and health data in medical research. Critical voices have focused mainly on concerns around its implementation; but little has been said about the argument that dynamic consent is morally superior to broad consent as a way to respect people's individual autonomy. In this paper, we identify two versions of this argument-an information-focused version and a control-focused version-and then argue that both fail to establish the moral superiority of dynamic over broad consent. In particular, we argue that since autonomous choices are a certain species of choices, it is neither obvious that dynamic consent would meaningfully enhance people's autonomy, nor that it is morally justifiable to act on every kind of consent choice enabled by dynamic consent.
{"title":"Dynamic consent: a royal road to research consent?","authors":"Andreas Bruns, Eva C Winkler","doi":"10.1136/jme-2024-110153","DOIUrl":"https://doi.org/10.1136/jme-2024-110153","url":null,"abstract":"<p><p>In recent years, the principle of informed consent has come under significant pressure with the rise of biobanks and data infrastructures for medical research. Study-specific consent is unfeasible in the context of biobank and data infrastructure research; and while broad consent facilitates research, it has been criticised as being insufficient to secure a truly informed consent. Dynamic consent has been promoted as a promising alternative approach that could help patients and research participants regain control over the use of their biospecimen and health data in medical research. Critical voices have focused mainly on concerns around its implementation; but little has been said about the argument that dynamic consent is morally superior to broad consent as a way to respect people's individual autonomy. In this paper, we identify two versions of this argument-an information-focused version and a control-focused version-and then argue that both fail to establish the moral superiority of dynamic over broad consent. In particular, we argue that since autonomous choices are a certain species of choices, it is neither obvious that dynamic consent would meaningfully enhance people's autonomy, nor that it is morally justifiable to act on every kind of consent choice enabled by dynamic consent.</p>","PeriodicalId":16317,"journal":{"name":"Journal of Medical Ethics","volume":" ","pages":""},"PeriodicalIF":3.3,"publicationDate":"2024-07-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141759263","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}